"The trouble is that once you see it, you can't unsee it. And once you've seen it, keeping quiet, saying nothing, becomes as political an act as speaking out. There is no innocence. Either way, you're accountable."
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20 November 2011

What's Wrong With Disability Awareness

Further reading:- Some Alternatives to Simulation Exercises- The Wrong Message- The Wrong Message -- Still__________I joined Georgetown University's disability awareness club, DiversAbility, now in its third year, upon arriving at campus. During one of our previous meetings, one of the club's officers mentioned that we will be hosting an "Ability Lunch," which had been done last year, in which people sit at different tables and simulate different disabilities -- for example, wearing a blindfold to simulate blindness or having one’s arm tied behind one’s back to simulate inability to use a limb or lack of a limb -- while eating lunch. I immediately raised objection to the idea, and was told that the discussion following the lunch included criticism of the event. If that is so, if the flaws in holding such an event are recognized, then why is this event held? I am in very strong opposition to the idea of the Ability Lunch for the same reasons that I stood alongside the Autistic community in 2010 when a well-meaning individual decided to declare Nov 1. as “Communication Shutdown Day.” The idea behind Communication Shutdown Day was that non-Autistic people could experience the social isolation and communication difficulties that Autistic people often have by not accessing online social networks or websites for the entire day. Beside the fact that the Internet has provided an incredible forum and means for Autistic people to communicate with one another about issues that affect our community in ways that we were unable to access prior to the widespread use of social media and e-mail, the idea of Communication Shutdown Day in no way reflects the reality of living as an Autistic person. A non-Autistic person spending one day without using social media will not understand the inherent differences and difficulties we face in social communication with non-Autistic people, the majority of which occur offline and face to face. A non-Autistic person who spends one day without using social media is not experiencing Autistic life. Autism is more than social challenges. The Autistic experience includes an array of sensory and information processing differences -- some of which are disabling -- and these are programmed into our neurological systems from birth through death. You cannot simulate being Autistic by shutting down Facebook for a day. The mere suggestion that this is a way for non-Autistics to empathize with Autistic people is absolutely ludicrous. It is lacking in empathy entirely. If you want to get into our shoes, you need to understand the reality of what it is like to live Autistic day to day for a lifetime, and that is not something that can be done by a one day “simulation” of not accessing social media. Similarly, it is absolutely ridiculous, if not outright offensive, to think that a non-disabled person can simulate a disability for an hour or two and therefore understand what it is like to live as a disabled person. The idea is well-meaning, but well-meaning people often blunder and harm in their good intentions in the absence of context and greater understanding. No amount of “good intentions” will change the nature of this event. It is a farce. It is a feel-good opportunity for some non-disabled people to pretend to be disabled for an hour so that they can go home and say, “I understand what it’s like to have a disability.” It is the equivalent of a non-Catholic attending mass, expecting to come away from the experience with an understanding of what it means to be devoutly Catholic. It might be a nice or interesting or strange experience, but in absolutely no way will this non-Catholic individual have any grasp on what it means to be devoutly Catholic in one’s lifestyle after going to mass once. None of the non-disabled people coming to the Ability Lunch will have any true grasp on what it means to live as a disabled person in our society because they are not disabled. The very idea or suggestion that this “Ability Lunch” will somehow create this type of “in their shoes” empathy is unfounded and untrue. It won’t. The only way to do that is to have actual dialogues with disabled people to share experiences, coming as peers and equals at the discussion table. To listen to the voices of disabled people discuss what being disabled means in their individual lives. To recognize agency and give respect. To understand that it is impossible for a non-disabled person to truly experience disability, and that it is impossible likewise for a disabled person to truly experience not being disabled. To recognize the limitations of any type of disability “simulation” and to host disability awareness events that do not marginalize, diminish, demean, reduce, and devalue the realities of the varied experiences of disabled people. No pity. No fear. No patronizing. Nothing about us without us!

17 comments:

I just started a new job at the University of Michigan, and I've been troubled by the concept of disability awareness here. It seems to me that there's this daunting emphasis on overcoming one's disability. More, there's this odd focus on ability (as opposed to disability) -- look at what one can accommplish despite one's disability. And with simulation exercises, there's also this languishing sentiment that resembles look how bad they have it, shouldn't we be grateful that we're not like them?

All of the above makes my skin crawl: it devalues disabled people and our lived experiences. And, instead of directing people's attention to the sociocultural barriers and discrimination we face, the attention is located on how much our disabled lives must suck.

A person can never understand exactly what it's like to be another person, but they can learn what its like to have to struggle to function in a world designed for others. I think the best way to help a person understand what it is like to be disabled is to put them in an environment designed for otherly abled than themselves. Consider putting a speaking person in a room of deaf people who are signing and ask them to interview everyone and write a report. Then read the report out loud and have everyone the writer he failed and laugh at him.

It's not a perfect idea. You might be able to come up with a better one. The formula I see is that you need to make a person experience their own disability (one they really have) to a level of distress and frustration that disable people commonly experience them. Its not what x disability feels like, its what it feels like to have a disability in an world that assumes you haven't got it. All humans are disabled. Its just we only call it a "disability" when society functions with the assumption of ability because the majority of humans have the ability. But take a minority ability, like perfect pitch or being able to do complex math in your head or being able to draw well, and make it necessary to operate and then you show a person at least a bit of what it feels like. Just had another idea more related to sensory differences. You need to create a situation in which a person must ignore things that communicate "danger" to them (to the point of having to fight panic) in order to accomplish a goal. Make them eat while experiencing a visual illusion that they are about to fall a great distance or while snakes are threatening. Make them take notes, do a test, etc. while experiencing something that is sending them into panic while everyone around them can't see it and looks at them like they are loosing their minds.

Disability is only a loss if a person started with the ability. Otherwise, it's simply lack of an ability. Since none of us can do everything that can be done, all of us are disabled. I think people need to be awakened to the fact that they too are disabled and that it is because their disabilities are majority and expected that they seem "normal."

......obviously I don't conceive of disability as a loss! But there has been a lot of excellent writing that suggests that this is why nondisabled have such problematic attitudes towards disability. Simulations only confirm this, the opposite of their stated intent.

The idea that everyone is disabled is nonsensical, and as a disabled person I feel it causes me a lot of harm. Disability is, by definition, what happens when your abilities fall outside the normal range. It is not an experience that many, or even most, people have. The life I head as an autistic person is, as Lydia outlines above, qualitatively different in many different dimensions than that of a nonautistic person, and that should not be trivialized.

I agree that no one can truly simulate what it's like to have autism. And no one can truly know what it's like unless they have it themselves. I have Asperger Syndrome, and the sensory challenges can make life overwhelming. Not to mention telling people why I get a glassy-eyed face when I listen to music (I have color-pitch synesthesia). They think that's a gift. And in a lot of ways it is, but that synesthesia also applies to certain words too. I often feel like I dangle between two worlds, the non-autistic and the autistic world.

The problem with simulation exercises is that they are mired in the medical model: disability is an individual impairment, nothing more. There is no way that a simulation exercise can show able-bodied people what disabled people have to put up with because of social, environmental, and cultural barriers. Real empathy is about listening the complexity of another person's experience, not doing an exercise and assuming you get it.

I've seen a really good list somewhere of "accommodations" that nondisabled people get as a matter of course. I can't find it now but it included observations that chairs around a table are an accommodation to non-wheelchair-users, and lights in a building are an accommodation to sighted individuals.

So you could maybe implement Ruby's idea for other disabilities by having them show up in a conference room with no chairs, and have people initially refuse to accommodate you when you ask for one ("Can't you sit on the floor?"). Or when you ask to turn on the lights ("take some responsibility and bring your OWN light around with you if you need one. Geez!")

The Ability Lunch was earlier today (20 Nov. 2011), and I spoke at length with some of its organizers and co-chairs, one of whom in particular was very interested in specific suggestions for changes to next year's events or other events.

Please share away, as I emailed the link to this page with the comments.

I feel the perspective that all are disabled causes more good than harm. I think it helps people realize that people with uncommon disabilities are not broken, do not need to be pitied, have abilities also, have something to contribute to society. In meeting a new person, the expectations become of variety instead of sameness. What variety we might meet does not even have to be predefined by currently identified disabilities. I'm sure there are plenty of disabilities we haven't labeled yet that people are struggling with. Usually when the disability hasn't even been identified, the person gets judged as "bad" and then after identifying a disability, the person gets pitied as have an illness. By starting with the understanding that everyone has disabilities, that we all can't do some things, then it ceases to be a reason to judge people or to pity, it's just a fact, something for us to learn to live with.

Trivialized . . . hmmm. Part of me can understand this. Its like saying well their struggles are as difficult as mine which seems unfair; except in many situations it may be true and to deny it is to trivialize someone else's struggles, struggles that we do not know anything about either. All people struggle with something. I won't argue that all people's problem are equal. I think such things are not measurable. I will argue that we have no business assuming ours are worse, that to do so assumes more knowledge about another person than we have. I think we all need to be open to learning about the person in front of us, to understanding that all people have limitations that we personally do not understand, limitations that may or may not have a label or government protection, instead of only trying to understand the differences of people that doctors have labeled.

I discussed the idea of disability as a social construct here (http://autistichoya.blogspot.com/2011/11/disability-is-social-construct.html). I believe that the idea of disability that we have is defined by the societies in which we live and the attitudes that have been created and propagated through those societies. On that definition, one can use different ideas of what it means to be disabled, but the spectre of the socially-accepted definition of being disabled will always exist in the backdrop. That idea of disability cannot co-exist with the idea that every individual is disabled in some way as that idea carries with it the notion that to be fully able (or not disabled) means certain specific things about one's life. (But I'd rather not regurgitate my previous article.)

On the other hand, if our idea of what it means to be disabled, as a society, changes, then what Ruby is proposing may not be as radical as it sounds -- it reads similarly to the idea that everyone is able, provided with supports necessary for each individual to live a meaningful life on his or her own terms -- not the terms dictated by other people or the expectations or preconceptions of those other people.

I don't think simulations of disability are completely bad things, but the majority of the time the simulations seem problematic in some way, such as ...the one you're describing, and they shouldn't be presented as if they are giving a completely accurate feeling of the entirety of the experience of being disabled. For one thing, a person who is blindfolded for an hour to simulate blindness is thinking of blindness as foreign and scary, which is a different experience than blind people have of blindness.

It sounds as if the goal of this lunch is to provoke awareness through pity, not through acceptance, and I don't think people with disabilities need any more pity or to have skewed ideas of what it means to be disabled promoted as awareness. The comparison to Communication Shutdown was REALLY accurate here. This is why Corina started ASDay, why I promoted it, and why so many people joined in.

I hope that this group rethinks the way they're presenting disability and becomes active in ways that are more beneficial and less exploitative. If they don't, at least you've spoken out about it.

I have a vivid memory of refusing to participate in something similar at a summer camp. My reasoning was "I've lived with a disability for seventeen years [my age at the time]. I don't think emulating one for half an hour will help me." I also pointed out that I could not pull off my disability and become "normal" when lunch was over. But it was someone else who pointed out that a person with any one of the disabilities emulated would have learned strategies to work around it, and that because of that it wasn't realistic. I was glad to hear that because it put into words what I was having trouble saying.

From what I've seen of the event and what I've heard, it appears as though you are attacking the ability lunch because you came into the event without bothering to read up on what the event set out to accomplish and what the event was about. The fact that you didn't even bother to check the correct spelling of DiverseAbility or that the organization is in its third year, not second only supports my suspicion that your criticism of this event stems not from actual shortcomings of the program but from your own desire to use this as a chance to voice your views for autism advocacy. At no point during the dinner did anybody claim that the exercises would perfectly simulate what it's like to have a disability, rather, to raise awareness and stimulate discussion about the way we see, understand and live with disability in everyday life. DiverseAbility is NOT a disability advocacy group, rather, a disability awareness organization. I find your vendetta against this group akin to someone protesting African American history month in public schools because it can't make up for the travesties the African race suffered before the civil rights movement. Before you respond to this post I suggest you actually take the time to read up on the DiverseAbility organization before coming to its events with a chip on your shoulder and outrage in your heart

I actually did check in multiple places for the correct spelling, and I have seen it spelled both as DiversAbility and DiverseAbility. I have never known which spelling is correct, because I've seen it both ways including on communications that appeared to be official. I am on the mailing list and in fact have intended to join this organization, because I applaud its aims and purpose, which to my understanding, are to promote positive awareness of pluralistic experiences of disability or being disabled. I have no vendetta against this student organization whatsoever, and I'm floored by your overanalysis of my writing that jumped to this conclusion without you knowing much about me at all.

I am not the only person who feels that disability simulations, no matter by whom they are hosted or planned, ultimately reinforce stereotypes of disability more than dispel them and promote positive, long-term reflection and discussion. There is at least one study that showed that disability simulations are far more likely to reinforce stereotypes regardless of the intentions and identities of the people planning them. I think DiverseAbility can and should do many far more productive things and hold far more productive events around pluralistic experiences of disability or specific disabilities than to host a disability simulation program.

I'm sorry you interpreted my writing as unnecessarily angry. You seem to see an agenda that I do not and did not have. I want to be part of a student organization that promotes positive awareness and discussion around disability, and everything else that I know of DiverseAbility suggests that it does in fact do that in its other events and programming. I feel that a disability simulation is an example of an unnecessary program that could be replaced with far more enriching and stimulating events.

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